Skip over main navigation
  • Log in
  • Basket: (0 items)
  • Contact us
DEBRA UK
Tagline goes here!
  • Facebook
  • Twitter
  • Instagram
  • LinkedIn
  • YouTube
Furniture  collectionDonate Contact us
  • Twitter
Menu
  • Emergencies
  • Information & support
    • Coronavirus (COVID-19)
    • About EB
      • What is EB?
      • Testing & diagnosis
      • EB Simplex (EBS)
      • Dystrophic EB (DEB)
      • Junctional EB (JEB)
      • Kindler EB (KEB)
    • Treatments & healthcare
      • Emergency information for EB patients
      • Specialist healthcare
      • Skin & wound care
      • Pain & itch
    • Support for you
      • How we can help
      • Meet our support team
      • Mental health & distress
      • Carers
      • Finances & benefits
      • Work & employment
      • Learning & education
      • End of life & bereavement
    • DEBRA Holiday Homes
      • Planning your stay
      • Brynteg, North Wales
      • Norfolk, England
      • Poole, England
      • Weymouth, England
      • Windermere, England
      • FAQs
    • Meet others with EB
      • Become a member
      • Member events
      • Member stories
    • Knowledge hub
  • Healthcare professionals
    • EB patient management
    • Specialist healthcare
    • Training events
    • Clinical Practice Guidelines
    • Additional resources
  • Our research
    • EB research
    • Apply for funding
  • Who we are
    • Who we are
    • Our history
    • Our strategy
    • Our people
    • Our values
    • Equality, Diversity & Inclusion
    • Work with us
    • How we are governed
      • Our trustee board
      • Our senior team
      • Our committees
    • Our policies
    • Our reports
    • The DEBRA Effect
  • Get involved
    • Donate
      • Donate online
      • Regular giving
      • By post or phone
      • Payroll giving
      • Leave a legacy
      • In memory donation
      • DEBRA lottery
    • Become a member
    • Fundraise for us
      • Meet the Fundraising Team
      • Ideas & resources
      • Friends of DEBRA
      • Organise your own event
      • Fundraise at your school
      • Request a fundraising pack
      • Fundraising FAQs
      • Fundraising Promise
      • Fundraising T&Cs
    • Join an event
      • Member events
      • Healthcare events
      • Fundraising challenges
      • Golf Society
      • Shooting Society
      • Major events, lunches & dinners
      • The Kiltwalk 2022
    • Corporate partnerships
    • Trusts & foundations
    • Leave a legacy
    • Raise awareness
      • #FightEB
      • #EBtome
    • Volunteer for us
  • Shop
    • Find a store
    • Furniture collection
    • Our eBay store
    • Volunteer in our stores
    • Why shop with us
    • Donate items
    • Hygiene & safety
  • News
  • Admin
    • Log in
    • Contact us
  • Basket: (0 items)
  1. Information & support
  2. Support for you

Knowledge hub

Information & publications

DEBRA produces a range of booklets designed to give anybody living with EB, including individuals, families and carers, reliable information.

  • About EB
  • Fact sheets
  • For parents, schools and playgroups
  • Other
  • Clinical Practical Guidelines

Working closely with specialist EB nurses and the NHS, a widespread review of all publications is currently underway to make them all easily available online, at which stage they will be added to the list below.

 

About EB

  • What is EB? infographic
  • I have EB medical emergency cards
  • EB Simplex Dowling Meara (© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)
  • Mild Dystrophic EB (© GOSH NHS Foundation Trust. Compiled by the Clinical Nurse Specialist for Epidermolysis Bullosa and DEBRA in collaboration with the Child and Family Information Group at GOSH)
  • Kindler Syndrome (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)
  • Acral Peeling Skin Syndrome (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital EB Nursing Team and Birmingham Children's Hospital Family Health Information Centre)

 

Fact sheets

  • Advocacy
  • Applying for Disability Living Allowance (DLA)- if your child has EB, they may be eligible for DLA, which is a benefit to help with extra costs arising from living with a condition or disability. You can download the form here. DLA is tax-free. You can claim even if you work or if your family has savings or money coming in. Contact the Community Support Team or call 01344 771961 (option 1) if you need assistance with the application or help filling out the form.
  • Direct payments: care and support
  • What are direct payments?
  • Direct payments: a traffic light guide
  • Education - starting or changing schools
  • Education - college 
  • The Equality Act (2010)
  • Looking after your feet
  • Swimming with EB
  • Transferring to Personal Independence Payments (PIP)

  

Information for parents, schools & playgroups

  • Care of a new baby with EB
  • Nutrition for babies with EB
  • Nutrition for children over 1 year of age
  • EB for Parents, Schools and Playgroups
  • Recommendations for Children with EB in Schools (for Education Staff) (© Birmingham Children's Hospital NHS Trust, available here by kind permission of the Birmingham Children's Hospital Occupational Therapy Team)

  

Other

  • EB: My Story - Young People Talk

 

Clinical Practice Guidelines

We fund DEBRA International’s clinical practice guidelines (CPGs) programme, which works with colleagues all over the world to provide professionals and patients with the best guidance and advice to manage different aspects of EB.

Current topics covered include:

Foot care:
Dystrophic nail care

DOWNLOAD

Foot care:
Hyperkeratosis (callus) care for adults with EB

DOWNLOAD

Foot care:
Footwear advice for adults with EB

DOWNLOAD

Foot care:
Footwear advice for parents caring for a child with EB

DOWNLOAD

Laboratory diagnosis

DOWNLOAD

Occupational therapy:
For adults with EB

DOWNLOAD

Occupational therapy:
For parents caring for a child with EB

DOWNLOAD

Psychosocial care:
For adults with EB

DOWNLOAD

Psychosocial care:
For parents caring for a child with EB

DOWNLOAD

Psychosocial care:
Support from your EB team

DOWNLOAD

Skin and wound care:
For adults with EB & their carers

DOWNLOAD

Skin and wound care:
For parents caring for a child with EB

*coming soon*

Skin and wound care:
Healthy body & skin

DOWNLOAD

Visit the DEBRA International website to learn more and to download versions both for professionals working with EB and for people living with EB.

 

DISCLAIMER

The information on this website is not intended to replace professional health advice. The information is provided for informational purposes only. Although every reasonable effort has been made to ensure that the information on this website was accurate at the time of publication, we accept no responsibility for any errors, omissions or misleading statements on this site or on any site which you may be able to access through a link on this site.

The use or distribution of the information on www.debra.org.uk is at the sole discretion of the user or any subsequent third party and DEBRA does not take any responsibility for such use or consequences.

Published: 26th September, 2020

Updated: 13th June, 2022

Author: Kat Heppinstall

Share this page
  • Email
  • Facebook
  • Twitter

Latest

  • Filsuvez® gel approved for use in the EU

    Filsuvez® gel approved for use in the EU

    The UK is a step closer to having the first approved treatment for EB patients.

  • Mark Algar and Paul Buckworth complete 113km Ultramarathon to help #FightEB!

    Mark Algar and Paul Buckworth complete 113km Ultramarathon to help #FightEB!

    On the 18th June 2022, Mark Algar & Paul Buckworth took on an 113km Ultramarathon to help #FightEB.

  • Leave a legacy

    Leave a legacy

    Leaving a gift in your will is a simple but vital way to help make sure DEBRA is there to provide care and support to people living with EB and fund life changing research.

  • DEBRA Memory Makers campaign raises £55,119!

    DEBRA Memory Makers campaign raises £55,119!

    Our #DEBRAMemoryMakers campaign has raised an incredible £55,119.30 towards our DEBRA holiday homes!

Related

  • Meet others with EB

    Meet others with EB

    We recognise the significant value of peer support to share experiences with friends and other families. DEBRA events offer you the opportunity to get together and enjoy social activities.

  • DEBRA Holiday Homes

    DEBRA Holiday Homes

    Located in some of the most popular and beautiful 5-star rated parks in the UK, members can be as active or relaxed as needed in our adapted holiday homes with a wide range of activities.

  • Support for you

    Support for you

    As a membership organisation, we aim to provide the best support and care for people living with EB. We have a team experienced in the many challenges EB can bring and can help members in many ways.

  • Treatments & healthcare

    Treatments & healthcare

    There is currently no cure for EB, but at DEBRA UK we're working hard to change this. Treatments are designed to help ease and control symptoms such as pain and itch to improve quality of life.

  • About EB

    About EB

    Epidermolysis Bullosa (EB) is the name for a group of painful genetic skin conditions that cause the skin to become very fragile and tear or blister at the slightest touch.

  • Coronavirus (COVID-19) Support

    Coronavirus (COVID-19) Support

    There is currently no specific advice to EB patients because EB impacts everyone differently. If you are in contact with any health services you should mention that you have EB along with how it affects you, so they provide the best care.

Most read

  • Furniture collection

    Furniture collection

    Donate your unwanted furniture, homewares and electrical items using our free furniture collection service. With safety measures in place, donating your items couldn’t be easier.

  • Find a store

    Find a store

    Find your nearest DEBRA charity shop and help fight EB. Our stores sell affordable and quality pre-loved clothing, furniture, electrical items, books, homeware and more.

  • Items we do not sell

    Find out what health and safety standards and labels we require and which items we cannot sell.

  • Contact Us

  • What is EB?

    What is EB?

    Epidermolysis Bullosa (EB) is a painful genetic skin blistering condition with no cure. Find out about different types of EB, causes, symptoms and treatments.

  • Donate items

    Donate items

    Donate your quality pre-loved items, including clothes, furniture and homeware to keep them from landfill and help us to raise vital funds through our stores. Find out more about how to donate items today.

  • Work with us

    Work with us

    DEBRA can only continue its vital work with the support and encouragement of the local community and with the hard work of its employees and volunteers.

  • Who we are

    Who we are

    DEBRA is the national charity that funds research and healthcare to support individuals and families affected by Epidermolysis Bullosa (EB)

  • Dystrophic EB (DEB)

    Dystrophic EB (DEB)

    Can be mild or severe (dominant or recessive). The defective gene and fragility occurs below the basement membrane within the superficial dermis.

  • Our history

    Our history

    DEBRA was founded in 1978 by Phyllis Hilton whose daughter Debra had Dystrophic EB – the charity was the world’s first EB patient support group.

Tag cloud

Wheelchair accessible

Latest tweet

Stay in touch

We would like to keep you updated by email about our news, events, activities, and how you can support us.

You can unsubscribe at any time. To learn more about how we'll use your data, read DEBRA's privacy policy.
 
 

 

Helpful links

  • About us
  • Careers
  • Our reports
  • Our policies
  • Contact us

Our stores

  • Find your local store
  • Furniture collection
  • Become a volunteer
  • Donate items
  • Why shop with us

Get involved

  • Join an event
  • Fundraise for us
  • Corporate partnerships
  • Leave a legacy
  • Raise awareness
  • Sitemap
  • Accessibility
  • Terms & conditions
  • Privacy policy
  • Cookies
  • Modern Slavery

  • Facebook
  • Twitter
  • Instagram
  • LinkedIn
  • YouTube

Fundraising regulator logoAssociation of Medical Research Charities logo Chartered Institute of Fundraising logo  CAF International - Validated organization badge

DEBRA is registered as a Charity in England and Wales (1084958) and Scotland (SC039654).

Company limited by guarantee registered in England and Wales (4118259).  © 2022
Registered office: DEBRA, The Capitol Building, Oldbury, Bracknell, Berkshire, RG12 8FZ

Manage Cookie Preferences